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Board of Directors

Nicole Derusha-Mackey

Nicole Derusha-Mackey

Nicole has been active with the Barth Syndrome Foundation since attending the BSF Conference in 2008 and joined the Board in 2016. In addition to other BSF volunteer responsibilities, she also was a presenter at the 2018 Patient Focused Drug Development meeting held by BSF.  She is the mother of two boys born with Barth Syndrome: Nathaniel, who passed away at just two weeks of age in 2002, and Devin, who underwent heart transplantation in 2004 as an infant. Nicole has dedicated much of her time with BSF to offering her unique perspective of raising a Barth boy after heart transplant surgery and supporting communications and grassroots fundraising.  

Professionally, Nicole has worked on numerous political campaigns, was a legislative aide in the Michigan House of Representatives and currently serves as Bay Regional Coordinator for U.S. Senator Gary Peters. She, her wife, Sarah, and Devin live just outside of Flint, Michigan. 

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